The NYS Attorney General’s office requests that all patients, their doctors, or their representatives make a call to Health Care Bureau’s toll-free Helpline or fill out a complaint form if they feel they have been wrongly denied coverage for their Hep C treatment medications.Call the Health Care Bureau’s toll-free Helpline to speak to patient advocate: 1-800-428-9071orFill out the online complaint formhttps://www.ag.ny.gov/health-care-complaint-form?wssl=1​

New York State (NYS) implemented the nation’s first hepatitis C testing law , on January 1, 2014, resulting in an increase in the number of people who were screened for hepatitis C and linked to care. The law is an important policy to help achieve a major goal of the Viral Hepatitis Action Plan: increasing the proportion of people who know their hepatitis C status.The NYS hepatitis C testing law mirrors the 2012 recommendations from the Centers for Disease Control and Prevention (CDC) - PDF, which expanded hepatitis C screening to all persons born between 1945 and 1965, often called baby boomers. Many people living with hepatitis C have no symptoms and have not been diagnosed. The testing law is particularly important because more than 75% of people living with hepatitis C are baby boomers - PDF.The NYS law requires health care providers to offer the one-time hepatitis C screening test to patients in primary care settings. The test must also be offered to anyone receiving services as an inpatient of a hospital or from a physician, physician assistant, or nurse practitioner providing primary care, regardless of the setting. If the test is reactive, the patient must receive follow-up health care, including an HCV RNA test (to confirm infection).Impact of the NYS Testing LawThe law required the NYS Department of Health to conduct an evaluation of its impact with respect to:

the number of persons who are screened for hepatitis C and

the number of persons who have accessed care following a positive test.

All activities related to the testing law evaluation were coordinated by the NYSDOH AIDS Institute.Results from the evaluation reflect progress in people learning their hepatitis C status:

From a survey of 106 laboratories, the number of hepatitis C test specimens from Baby Boomers increased by 275,000 -- from 538,000 in 2013 to 813,000 in 2014 -- representing an increase of 51% in hepatitis C screening tests performed one year after the law was enacted.

NYS Medicaid data showed a 74% increase in total Medicaid hepatitis C testing in recipients aged 50 to 70 in the year immediately following the implementation of the law compared to the previous year.

Data from a sample of electronic health records (EHRs) maintained by the NYC Primary Care Information Project showed a 46% increase in the number of Baby Boomers who had hepatitis C screening ordered by medical providers in a single year.

NYS Behavioral Risk Factor Surveillance System (BRFSS) data showed an increase of 270,000 baby boomers who said they had ever been tested for hepatitis C between 2013 and 2014.

The evaluation also reveals progress in linking people to care:

A review of NYS hepatitis C surveillance data showed a 40% increase in linkage to care rates among newly diagnosed cases in NYS outside of NYC.

Additional strategies have been implemented to improve the impact of the law including:

Changing NYS Education Law to allow registered nurses to conduct a hepatitis C screening test using a non-patient specific order. This policy broadens the capacity of the health care system to screen more people for hepatitis C.

Summary: Impact of the New York State hepatitis C testing lawNew York State (NYS) implemented the nation’s first hepatitis C testing law , on January 1, 2014, resulting in an increase in the number of people who were screened for hepatitis C and linked to care. The law is an important policy to help achieve a major goal of the Viral Hepatitis Action Plan: increasing the proportion of people who know their hepatitis C status.The NYS hepatitis C testing law mirrors the 2012 recommendations from the Centers for Disease Control and Prevention (CDC) - PDF, which expanded hepatitis C screening to all persons born between 1945 and 1965, often called baby boomers. Many people living with hepatitis C have no symptoms and have not been diagnosed. The testing law is particularly important because more than 75% of people living with hepatitis C are baby boomers - PDF.The NYS law requires health care providers to offer the one-time hepatitis C screening test to patients in primary care settings. The test must also be offered to anyone receiving services as an inpatient of a hospital or from a physician, physician assistant, or nurse practitioner providing primary care, regardless of the setting. If the test is reactive, the patient must receive follow-up health care, including an HCV RNA test (to confirm infection).Impact of the NYS Testing LawThe law required the NYS Department of Health to conduct an evaluation of its impact with respect to:

the number of persons who are screened for hepatitis C and

the number of persons who have accessed care following a positive test.

All activities related to the testing law evaluation were coordinated by the NYSDOH AIDS Institute.Results from the evaluation reflect progress in people learning their hepatitis C status:

From a survey of 106 laboratories, the number of hepatitis C test specimens from Baby Boomers increased by 275,000 -- from 538,000 in 2013 to 813,000 in 2014 -- representing an increase of 51% in hepatitis C screening tests performed one year after the law was enacted.

NYS Medicaid data showed a 74% increase in total Medicaid hepatitis C testing in recipients aged 50 to 70 in the year immediately following the implementation of the law compared to the previous year.

Data from a sample of electronic health records (EHRs) maintained by the NYC Primary Care Information Project showed a 46% increase in the number of Baby Boomers who had hepatitis C screening ordered by medical providers in a single year.

NYS Behavioral Risk Factor Surveillance System (BRFSS) data showed an increase of 270,000 baby boomers who said they had ever been tested for hepatitis C between 2013 and 2014.

The evaluation also reveals progress in linking people to care:

A review of NYS hepatitis C surveillance data showed a 40% increase in linkage to care rates among newly diagnosed cases in NYS outside of NYC.

Additional strategies have been implemented to improve the impact of the law including:

Changing NYS Education Law to allow registered nurses to conduct a hepatitis C screening test using a non-patient specific order. This policy broadens the capacity of the health care system to screen more people for hepatitis C.

Although primary hepatocellular cancer or “liver cancer” is a relatively rare cancer, its incidence in the United States increased 72% from 2003-2012. Less than half (43%) of the 40,000 people diagnosed each year have early-stage disease, and their 5-year survival rate is only 31%.

Fortunately, new treatment modalities and clinical trial results are promising. Yet despite these advances, the 5-year survival rate for metastatic liver cancer is a dismal 3%. The Centers for Disease Control and Prevention (CDC) also note that the mortality rate for liver cancer is increasing faster than the rate for any other type of cancer.

Some of the risk factors associated with the development of liver cancer include obesity, type II diabetes, heavy alcohol consumption, cirrhosis, non-alcoholic fatty liver disease, an autoimmune disease called primary biliary cirrhosis, and inherited metabolic diseases, such as hereditary hemochromatosis. A few rare diseases increase the risk of liver cancer (eg, tyrosinemia, porphyria, Wilson disease). Long-term exposure to aflatoxins, produced by a fungus that contaminates certain grains, and exposure to the chemicals vinyl chloride and thorium dioxide are associated with the development of liver cancer. Long-term anabolic steroid use slightly increases the risk of liver cancer, whereas corticosteroids do not increase the risk of liver cancer.

A major contributing factor for liver cancer is infection with hepatitis B or C. Worldwide, chronic infection with hepatitis causes 80% of all primary liver cancers. In the United States, hepatitis disproportionately affects Asian Americans and Pacific Islanders; although they make up less than 5% of the population, they account for more than half of Americans infected with hepatitis B. In fact, two of three Asian Americans with hepatitis B are unaware that they are infected.

The CDC now recommends hepatitis B testing for anyone born in Asia or the Pacific Islands (except New Zealand and Australia) and anyone born in the United States, who was not vaccinated at birth, and has at least one parent who was born in East or Southeast Asia (except Japan) or the Pacific Islands (except New Zealand and Australia).

Although there is no vaccine to prevent hepatitis C, there is an effective vaccine against hepatitis B infection. Receiving all three doses of hepatitis B vaccine provides greater than 90% protection to infants, children, and adults who are immunized before being exposed to the virus. In fact, the hepatitis B vaccine is known as the “world’s first anticancer vaccine.” In many countries, including the United States, vaccinating newborns with the hepatitis vaccine has reduced the number of new cases of liver cancer caused by hepatitis B.

The American Association for the Study of Liver Diseases issued screening recommendations for liver cancer, and they include screening people at high risk for developing liver cancer and screening people who are awaiting liver transplants. Screening should include ultrasound imaging in conjunction with alfa-fetoprotein (AFP) blood test monitoring (the AFP is not sensitive nor specific enough to be used alone). People with chronic hepatitis B or C infection need to be screened every 6 months.

The treatment of liver cancer depends on the stage of the disease and patient factors (eg, comorbidities, expected lifespan, the patient’s goals). Options may include surgery (partial hepatectomy or liver transplant), tumor ablation or embolization, radiation therapy, targeted therapy, and chemotherapy. A number of clinical trials are enrolling people diagnosed with liver cancer.

Because liver cancer is an uncommon disease, patients may benefit from referral to national and online resources. Online support for patients with liver cancer includes the American Liver Foundation (www.liverfoundation.org) and Liver Cancer Connect (www.livercancerconnect.org), a dedicated program of the Hepatitis B Foundation. The site includes a directory of liver cancer specialists and liver cancer treatment centers, informational webinars, resources for healthcare providers, and information on new drugs and clinical trials.

Numerous unproven “cures” and treatments for liver cancer are advertised online, which may appeal to both the newly diagnosed as well as those who have not responded to treatment. As oncology nurses, we can help our patients navigate through the misinformation and identify reputable sources of information. For patients with liver cancer, as well as many other types of cancer, the best outcomes occur when patients make informed, evidence-based decisions

If you live in New York State and having issues with insurance accessing Hepatitis C medications,please call and report to Attorney Generals helpline at1800-428-9071.​​They want to hear directly from you or your medical provider for you.